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Just Starting The Fight

nyisles's picture
nyisles
Posts: 26
Joined: Mar 2013

I am a 35 year old male who is just starting the fight against kidney cancer.  Back in January 2013, I noticed a small little bump, almost like a bug bite, on the side of my stomach just under the skin.  I did not like it and wanted it removed and went to 3 doctors...all of them said it was a harmless lipoma and I should just leave it alone.  Since I insisted it be removed I finally had surgery scheduled with doctor #3.  Well doc #3 cancelled and rescheduled me so I went to doc #4.  The bug bite was much bigger now and since January (this was now mid March 2013), it was about the size of a golf ball.  Doc #4 scheduled surgery 3 days later, but was concerned about how fast it was growing and sent me for an ultrasound on March 20th to see how big and how deep the bump went.  A quick procedure, the ultrasound was complete and I was thinking about what I wanted for lunch when the radiologist came in and said he wanted to do a CT scan.  When I asked why, he said there is something on my kidney.  I then asked is there ever something on the kidney that is ever good and he said yes there are benign tumors on the kidney.  So I went for CT scan #1.  When the scan was completed the radiologist said they wanted to biopsy the lump on my side.  I asked why, and he said we think you have kidney cancer and believe that lump is a indicator of such.  Right then and there I felt like I was in the middle of a nightmare...total shock...in disbelief...and felt like I was just hit in the head by a sledgehammer. 

They did the biopsy and I started asking about what was going on.  The radiologist was evasive but said he saw a 7cm mass on my left kidney, the lump on the left side of my skin, and a lung nodule (which they think is related but not sure).  After a bunch of doctor speak I flat out asked him if it could be fixed from what he saw on my scans.  He said that he thought it was curable if they remove the kidney, remove the side mass, and remove just a piece of the lung.  He said before I left he wanted to do another CT scan of my left side to get more pictures.  After that, he looked at them and I was told I could go home.

Went to doc #4 on March 25th to talk about the scans and that he already got in contact with the Chief of Urology about my case.  Got in to see the Urologist on March 28th.  He told me that surgery is scheduled for April 5th to remove the kidney and side mass.  When I asked about the nodule in the lung, he said it is too risky of a surgery to remove all 3 at the same time.  He felt that I should get the kidney and side mass out immediately....recover...then go back for the piece of the lung.  Was told doing all 3 at once would increase the possibility of complications and significantly push back my recovery time.  I am going for a 2nd opinion on April 2nd.  He did also say he wanted me to see an oncologist about some "preventative" treatments after the surgery.  He used the analogy of walking into a room and seeing mold on the wall.  You take out the wall and replace it with a new one, but since it may be in the air, you still fumigate the place anyway to be safe. 

Did my pre-surgical testing yesterday, have 2 CT scans (full body and bone since they only scanned neck to pelvis last week) and an appointment with my primary care on Monday April 1st. 2nd opinion at Sloan Kettering in NY on April 2nd.  Kidney and side mass removal surgery on April 5th.  Everything has moved so fast and I was hit with so much that it has been very overwhelming.  The good thing is that I do have a great family and friends support system and many people praying for me, but I am a mess inside.  I try and be strong for them so they don't worry but when I'm alone at night by myself I often cry myself to sleep.  Usually I am tough as nails on things but this has turned me into a mess. 

I know people say you have to be positive but the more I read about kidney cancer the worse I feel.  All I can think about is me laying motionless in bed, white as a ghost, drooling on myself as my family takes care of me watching me rot away.  I also get flashes of me laying in a box while all my family and friends cry over me.  My mind has been going so crazy that I even looked into Dignitas in Switzerland just to spare my family the grief of watching me erode to nothing.  I know it is horrible to think and say....everyone says you are a fighter....you are young and strong......well I just found out last week that I am not as strong as I thought.  I am a complete mess...I am scared...I am worried...I feel like my life has been taken from me.  Don't know what to do...don't know where to turn to...don't know what is ahead.  I have always been religious and pray each night.  All I want to do is get through this and go back to my life cancer free.  There is so much I have not done yet....I am not married....have no kids....don't own my own house.  I just feel like I am now never going to be able to do those things.

Sorry for such a long message, but I stumbled upon this site and it seems that many people here are fighting the same fight....some better...some worse.  Any tips would be much appreciated.  The depression is deep...my mind is a mess...and I do not know how to handle it. 

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

I will tell you that the things you are reading are based on data from multiple years ago, and treatments have improved.  

Eliezer2
Posts: 58
Joined: Aug 2012

You will be sore for a few weeks after surgery.  After that there is no reason you cannot lead a useful productive life.  I had my kidney removed 13 years ago.  I became MORE athletic after surgery (I had been a bit of a couch potato before).  The emotional shock takes a few weeks to overcome, but it will pass.  Return to work when you can.  Eat well.  Watch some really funny movies (I recommend The Dictator)

 

If there is lung involvement, that makes normality just a little more of challenge but you can maintain a normal routine even with that.  The medications are no picnic, but heck you are young strong and handsome.

 

There is life after cancer.  Do not let it beat you, it is not worthy enough of defeating you!  You can whip it!  Show it who is boss!  Think of fighting cancer like getting into the rink with Cassius Clay and then beating his behind (forgive the Rocky images) because THAT is what you are about to do.

It might help to think about how many things can occur that are so much WORSE than a bout with kidney cancer - and that may help you keep perspective and even a bit of a sense of humor.  We are a fraternity of honor!  You are not in this alone!  I will expect a carrot cake from you when it is the 13th anniversary of your surgery!

icemantoo's picture
icemantoo
Posts: 1552
Joined: Jan 2010

ny,

 

Being told you have Kidney Cancer and that you have to have major surgery can scare the sh.. out of anybody. It did so to me 11 years ago. My neighbor Faye across the street started her road with the discovery of a lung noduke 18 years ago. She should be around many more years as she is only 82. I will be 70 in a few months. The Kidney Cancer is a primary tumor and once it is out  you are on your way to a hopefully full recovery. Many on this board are doing fine who started with more baggage than you.

The surgery is not fun, but it is required to join our club and be in the road to recovery. You being younger than most of us should make your journey easier. I am trying to find a nice word about the surgery, but can only say that it sucks. Believe it or not you will be able to joke about it down the road. How about some Kidney Pie. My wife took me to a restauant offering that before my surgery, I resusted the temtation.

 

Now let's get that buggar out so you can do all of the things with your life that you have not yet done.

 

Icemantoo

Eims's picture
Eims
Posts: 420
Joined: Feb 2013

i know exactly how you are feeling and i promise you will get through this.  it is scary and yes absolutely it is a nightmare but you are strong enough to overcome this.  i remember at the beginning i had anxiety attacks but with the help of some great people i got through it.  it is ok to be feeling the way you are but you have to try and lift yourself out of thos dark moments.  dont get me wrong you are totally entitled to feel like that and you will have good and bad days.  what you have to do is concentrate on getting over the surgery and on the road to recovery.  its always good to talk and there are some great people here who are so supportive and just lovely.  

eims x

GSRon's picture
GSRon
Posts: 1247
Joined: Jan 2013

Yes, you are not alone..  for me the surgery was not as bad as for some, evn though I had some huge issues.  My doctors were awesome.. the nurses were awesome.. they made sure I was not in much pain.. or in pain for very long.   For me the worst was waking up after sleeping.. but within minutes the drugs kicked in.. life is good..!

On the lung part... it all depends on how big.. there are some good drugs that may be an alternative to another surgery.  Get a GREAT Oncologist ASAP.. I am sure others can give you recommendations...

The FEAR is far worse than the reality... we all know it...  Not sure my words are helpful... but stay positive... picture yourself AFTER the surgery... joking with the medical staff...

Ron

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

nyisles,

A feeling of hopelessness and overwhelming grief often accompanies a kidney cancer diagnosis. It's only human to become overwhelmed when you hear the word CANCER. My husband (John), one putt, was diagnosed in October 2011, and I'll never forget the moment of his diagnosis. I sat with him in the doctor’s office trying to hold back the tears and sobs as his internist pulled up the CT scans on the computer monitor. My mind raced thinking of life without him; it all sounded so glum.  And I did what you've probably been doing since being diagnosed—googled, googled, googled.

But as DHS points out above, the majority of information you find on the internet is old and outdated and discouraging. The good news is breakthroughs in recent years have added many new treatments to the weapons arsenal against kidney cancer and have resulted in many now referencing kidney cancer as a chronic disease, not a fatal one.

My husband has been in a clinical Nivolumab/Votrient  trial since May 2012 and leading a near normal existence after receiving the stage4/grade 4 clear cell kidney cancer diagnosis. His current reduction in tumor reduction now stands at 51%. See the posts of “foxhd”; see his early diagnosis and where he is now.  But a positive attitude and belief that you can beat Cancer is one of your  strongest weapons as evidenced by Fox and the other warriors on this Board. Look at the many NED’s (no evidence of disease) that have illuminated this Board recently. The success stories are multiplying as we speak. Don’t think of dying; think of  living. Join hands with this Board's courageous survivors who are winning the fight against Cancer. It will provide you strength;  I promise.

Eims's picture
Eims
Posts: 420
Joined: Feb 2013

Icemantoo and Alice you write the best posts....

Eims x

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Hang in there Nyisles.

nyisles's picture
nyisles
Posts: 26
Joined: Mar 2013

Reading all these posts put a tear in my eye and will probably cause me to cry myself to sleep again tonight but some of the tears will be because of the support and not because of the grief.  All of you here know what I am going through and although I have a great family and friends support system...all of you here are very important to me.  Even though I have just started my jouney in the fight, everyone here knows what it is like.  I believe that all of us on here are one big family with the same fight and the same goal.  Hopefully I can find another support system from the people on here going through the same thing in order to help me be more mentally upbeat like many of you are.  How do you all stay so strong and so positive?  Am I too new to this to understand yet?  Will that something that will come in future weeks when the grief goes down?   

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

There have been many days when I just want to crawl under the bed...moments when I ask why me?  I am too young for this SH**. (I am 49). 

But, I have had more time to come to grips with everything.  I am 11 months today since diagnosis.  I had a 6 cm tumor on the Kidney, and 6 months later, identified a 2 cm met on the lung.  I have the agressive Sarcomitorid differentiation.  If I believed the papers, I would be dead by now.  So would texas_wedge, and fox.  We are here. 

The Washington Nationals (Baseball) team's catcher, Kurt Suzuki, has written about how his father's kidney cancer shook up his life.  He had RCC followed by a solitary met to the lung.  So it was stage 4.  I am not sure of the grade.  This was in 2007.  Mr. Suzuki is still alive today. 

If you focus on the statistics, you will miss the anacdotal stories of survivorship.

It is way too early to think of euthanasia.  Get the two surgeries.  It will hurt like a son of a *****.  And then, recover.  For about 1/2 the people, the surgery for advanced kidney cancer is sufficient.  For others, there are drugs that can occaisonally cure it (HDIL2), and more drugs that can manage the disease. (reduce tumor growth).

These are treatments that are changing the statistics.  The median means nothing.  If it did, I would be dead. 

What I have done is to identify the things I really want to do, and do as many of them as possible.  My wife vetoes the room full of hot women, but I bought the long sought after sports car, I traveled to spring training, and I am going to opening day tomorrow.  In abut two weeks, I will have a new set of scans, will see what I can do in the next three months.  This sports car wants to go somewhere....

Oh, and by the way, yes...this sucks.  And everytime I feel an ache or pain (all the time, btw), I worry is it another met. 

I can also suggest finding a counselor, and going on anti depressents.  I think many of us are on those.  I could not function without my Vitamin Z (Zoloft).

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Either way, come on down to DC for Nats Kidney Awareness Day, August 31, 2013.  Nats vs. Mets

foxhd's picture
foxhd
Posts: 1911
Joined: Oct 2011

Donna Lee gets to the point with questions like yours. She says to just "man up" and pull up you big boy pants. Sorry for joining the club but why do you think we are here? It is because there is massive progress in treatment and life expectancy. After all this is a "survivors" network. Not the prepared to give up network. Do you consider yourself a loser or a fighter? This is serious business and takes some effort. Many here are tougher than a $2 steak. This is life. This is what we have to deal with. I have seen some that scare me with their tenacity and committment. World class fortitude. As time passes and you look back, you will see that too much worry is potential energy lost. Become assertive and deal with this head on. It becomes a momentum changer. I'll tell you that it's 2 years since surgery for me. They say men think about sex every couple minutes in one way or another. I'll bet I think about cancer more frequently than that. Cannot forget. But I NEVER think about it in a defeatist attitude. I am a survivor because I want to be. It takes some luck but have you ever wondered why some people are lucky and if it weren't for bad luck, some would have no luck at all. Turn you future around. I am not alone in this quest. That is the karma we share. Maybe this disease is like having to walk the plank with certain death. But NOBODY tells us that we have to have a short plank. (or that you can't wear water wings). Sadly we have lost and will lose members. But if we asked them for advice, I'll bet the house that they would all say, "Be positive, enjoy life and family. Eliminate negative thoughts. Persue options." Get in line to drop dead from old age. Toughen up my friend. Get new sunglasses. Your future is bright.

GSRon's picture
GSRon
Posts: 1247
Joined: Jan 2013

Hey Fox... you said it all, I think...   Wow.. the sun is out, and my pal is here from Germany... we are going for a nice motorcycle ride...

Be Well...

Ron

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Ron, I thought you were going to kick that distorted cricket ball into the long grass and bring back your Wild One pic! Cool

GSRon's picture
GSRon
Posts: 1247
Joined: Jan 2013

OK, back to the olde me..!  And I just got home from an almost perfect motorcycle ride with my pal Peter... I say almost.. the sun was shining... we rode some awesome back roads... it felt good to be riding again... on the way home, I was glad we decided to take the Hwy... yes it started to rain... then my (usually) trusty 1954 BSA decided to start to misfire... Hmmm my modern electronic ignition..??  Then it started to make some bad noises... we slowed up to about 70 MPH... more rain... then the sun came out... about 4 miles from home the noise turned in to a very loud knock... booo.. shut it down..  Sounds like the engine needs another rebuild...  Wish our bodies were as easy to fix....

All that said.. I will take a day like today any time...!!

Cheers..!!

Ron - I don't want a pickle... jus wanna ride my motor sickle.....

foxhd's picture
foxhd
Posts: 1911
Joined: Oct 2011

Sounded like fun GSRon. That's the attitude. What is a few breakdowns once in a while? Part of the fun. I got out for a while today also. We are still waiting for spring in the northeast.

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

nyisles,

It's okay to grieve for awhile. I've been there twice, now with my recurrence. But you have to move on and fight, that will come shortly.

I work on my attitude by staying active. I'm starting HD-IL2 treatment in a week. I had a lot of tests, along with a lung resection, in the last 2 months to get ready for this. During the echocardiogram stress test, the doctor kept telling me over and over I could stop at any time, but I kept on going and I told him during the test, "This is the only way I have to tell cancer to kiss my ass." Maybe not an elegant statement, but that has become my philosphy. By being active and living life, every day I tell cancer I'm not giving up.

That's what keeps me going. You can get through this.

--David

 

 

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

That's the attitude David! John and I will be following you closely as you start the HD-IL2. Lots of positive thoughts heading your way!  Kick it!!!!

foxhd's picture
foxhd
Posts: 1911
Joined: Oct 2011

Go for it David. Alot of analogies can be made between distance cycling and tol. the IL-2. Tough hills and tougher hills. You learn to put your head down and keep pace. You'll do good.

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Thanks Alice & Fox! April's gonna be a challenge but I'm ready for it.

As you can see nyisles, there are wonderful people here ready to help you keep fighting.

--David

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

Have you been doing pre hdIl2 stuff. Lotioning hydrating so on and so forth. It really does help with the side affects and dont forget the bottoms of your feet and personal areas. My husband ended up liking the aveno more than the eucerine . You may have read he had a mixed result from it. If they would have allowed it we would have continued. Get the rest during the treatment you can but most of all stay as positive as you can that really seems to help. Remember the Santa Clause look will disappear pretty quick when the dosing stops. You got this we are pulling for you :D Its not going to be easy but from what I have observed you kidney cancer patients are a pretty tough bunch! Sending lots of hugs and positive thoughts your way

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Thanks April! Yes, I am doing the pre hdil2 stuff. I'm trying to be sure I'm not the reason there are any problems. Thanks for the good thoughts!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

David,

If there is such a thing as a perfect candidate for IL2, you're it.  You have the grit, determination and attitude to carry it through, I'm pulling for you buddy.  Let's all shout it together CANCER, YOU CAN KISS MY ASS!!! 

Good luck and Godspeed,

Gary

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Thank Gary! I'm gonna do this right. Sometimes the kiss my ass cancer line is all I've got, so I use it!

--David

garym's picture
garym
Posts: 1651
Joined: Nov 2009

nyisles,

What you are going through is completely normal, we have all been there.  I'll share a little of my story because I think it may help.  My father-in-law was diagnosed with RCC 13 years ago, at that time he was told that short of keeping him comfortable, there was nothing they could do for him.  When I was diagnosed 3 1/2 years ago, seven people close to me (including my FIL) had been diagnosed with RCC, none survived, I know scared!  Now, I'm an oldtimer here where I am amazed every day by the courage, determination, and spirit of the souls on this board, you have come to the right place.  You've heard from fox, did you know he was full of RCC ("too many mets to count"), given a few months to live, and refused to accept it.  He recently passed the one year anniversary of his predicted expiration date and is now nearly cancer free.  The best advice I can give you is read everything there is about him here, it will change you.  His story is only one of an increasing number of long term survivors taking advantage of therapies that did not exist a short time ago.  I have watched kidney cancer go from a death sentence to a nearly chronic disease in a span of a few years and there is hope that it will be far more curable in the near future.  You will get through this and there is every reason to believe that you will tell your grandkids about someday.  Stick around and we'll help you along the way.

Welcome to the club,

Gary

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

I know everyone says to maintain a postive atitutude but it rough and I think I exhausted myself in the beginning with false bravado especially at work.  I am not sure it is a great idea to spend hours reading on the internet and anything written at all before 2007 is basicially meaningless. Don't worry about the surgery.  It really isn't that bad.  If you have to have a nodule out there the best place to have it is in the lung. Anyway I am on my way to Opening Day at Citifield with my boys and I am looking forward to it more then then any other game in my life  ( well except for Game 7 of the 86 Mets Sox World Series).  There really are some good things about this ....for one I can't tell you how little I care about money.

donna_lee's picture
donna_lee
Posts: 407
Joined: Feb 2009

But since you've joined this extremely selective society, "ya'll just come on in at chat away."  We do not issue hand engraved invites...more like the weird B/W squiggles of ultrasounds and CT's on a computer screen.

My survivors group just said hello to a new guy.  One doc though he had a pulled muscle in his back.  Since he had to leave early to see a different Dr., I don't know the results, yet.  We had some pretty involved discussions this morning with new people attending, one fellow going off today for surgery on the third type of cancer diagnosed within in 2 months, and another young mother being told that her chemo had worked and the tumor had disappeared.  Not too many dry eyes.  There is value in participating in a support group.  Legitimate studies have found that individuals have a 25% better recovery rate and/or survival rate than those who do not have a support group.  And as one guy added..."if I attend four different groups, will I be cured?"

Crying yourself to sleep works for a while, but one day soon you'll awake with a dry mouth from sleeping with your mouth open and realize that you're alive and not dead, so you need to get on with living.  I have been there, not once or twice, but three times.  And sprinkle in the broken ankle/dislocated foot followed by thumb surgery from hyperextenting my wrist and causing a huge nodule on a tendon on my right thumb (using crutches); and then the scare of thyroid nodules (were they cancerous? NO) but had to wait for unltrasound, nuclear scan and a biopsy.  I wan't ready to give up on any of it, but the repeated events can wear you down.

What we are all trying to tell you is that you are learning to be a cancer survivor.  There is no AH HA moment; but you will know you are living your life having had a diagnosis of cacncer.

There aren't any shortcuts to "God grant me patience, and I want it right now."  Laughter is good. Sleep and Rest are required.  Good Nutrition goes without saying. A chocolate donut can do wonders for your morale. Sharing your thoughts with friends and support group makes you articulate what you are experiencing and ultimately help you find your own solution, in time.

On a practical note, get copies of your tests, labs, etc. keep a phone list of contacts, file your paperwork for reference later, take someone to your appointments so you have 2 sets of ears to hear what is said, ask questions.  Don't assume that one doctor has all the answers for you.  Keep looking.  Ask for a referral.  Be your own best advocate.

Now, LIVE!  And that's an order.

We'll touch base another day and keep us posted.

Donna  _Lee

Eliezer2
Posts: 58
Joined: Aug 2012

We all know the "survivorship statistics" on the web are out of date and reflect largely the situation before the new meds came along.

 

I think we should operate some sort of Survivors Club where all survivors of RCC diagnosis or surgery get sent some sort of coupon on the 5th, 10th, 15th, ... and 50th anniversaries or their initial ordeal!

 

How's about a weekend at the beach in Florida?  ANyone up for organizing this?   ANyone know George Soros or Bill Gates well enough to ask for a donation for it?

 

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